Exploring patients’ experience and perception of being diagnosed with bladder cancer: a mixed‐methods approach

Objective To determine patient experience and perception following a diagnosis of non‐muscle‐invasive bladder cancer (NMIBC). Patient and methods Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed‐methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief‐IPQ) and (ii) semi‐structured interviews to explore patients’ experience of having haematuria, and initial and subsequent experience with a NMIBC diagnosis. Both assessments were completed at 6 months after NMIBC diagnosis. Results A total of 213 patients completed the Brief‐IPQ. Patients felt that they had minimal symptoms (median [interquartile range, IQR] score 2 [0–5]) and were not particularly affected emotionally (median [IQR] score 3 [1–6]) with a minimal effect to their daily life (median [IQR] score 2 [0–5]). However, they remained concerned about their cancer diagnosis (median [IQR] score 5 [3–8]) and felt that they had no personal control over the cancer (median [IQR] score 2 [2–5]) and believed that their illness would affect them for some time (median [IQR] score 6 [3–10]). A significant association with a lower personal control of the disease (P